Socialising with chronic pain: the struggles I have that people don’t know about

Socialising when you have chronic pain can be a real struggle. Going out for meals, attending weddings, or work events can be hard. Family, friends, and colleagues often don’t know the difficulties we face when we put on a brave face and try and join in.

Like I mentioned in a previous blog post why we must not let chronic pain stop us doing the things we enjoy, we must push ourselves and do things that make us happy. Socialising and spending time with friends and family is important for our overall wellbeing, and spending quality time with our colleagues helps us to feel part of the team.

Although I am in pain whenever I go out, I have to do certain things to make sure I cope as best I can. There are also things that I do or struggle with that aren’t always obvious to those around me.

I hide my pain

Whether people know I have chronic pain or not, I always tend to hide the fact that I am in pain or struggling. It’s part of our human nature not to want to show any weakness, and even more so when you’re in pain. You just want to feel normal (if there is such a thing) and not drawing attention to your pain is one way of doing this.

I have had my chronic pain since 2012 and in the early days it was difficult to not show some kind of sign that I was in pain – a grimace on my face, fidgeting to get comfy, deeper breathing when I have a sudden agonising twinge – but now I’m more used to my pain and most of the time I can hide it.

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I don’t know how to explain my pain

I don’t have a diagnosis for my pain so its’s even more difficult to explain what it is and what is causing it. I have chronic coccyx pain, but I don’t have a coccyx as I had it removed in February 2015. Because I don’t have a diagnosis, it’s easy to assume that people don’t believe me or that my pain is not justified. I often just say I have lower back pain, which a lot of people can relate to, but that never really emphasises how much pain I am in. A lot of people brush it off as something that everyone has experienced and ‘get over it’ type of thing.

It’s also a really embarrassing pain to try an explain, which doesn’t help me feel confident at all.

I avoid one pain but cause another

Several of my previous blog posts have been about my neck pain. My neck pain is caused by sitting abnormally, but even though I am consciously trying to sit normally, sometimes this can’t be avoided and I have to sit to avoid my coccyx pain as is it is just too painful. And when I do, my neck pain more often than not kicks in. So here lies another pain to try and explain; often I don’t bother.

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MY pain management is always harder

At home I can lie down in my pyjamas or joggers and get as comfy as possible; I can use my heat packs to help manage my pain; and I can have a good cry if I’m really struggling. These things can’t be done when socialising or out in public. Well, they could, but it would mean drawing unwanted attention to myself.

I don’t go out a lot these days as I tend to prefer cosy nights in with my family, spending time walking my dogs, or working on my blog. But I do enjoy going out for dinner, especially trying new places and new food. I always have to think ahead and consider the seating to make sure it is suitable – hard chairs are a no no.

Because my pain kicks in when I sit down, it’s so easy for people to tell me to stand up if I’m struggling. But how many people want to stand up while everyone else is sitting eating? It feels a bit awkward and is embarrassing. Apart from making a special trip to the toilet, or walk around aimlessly, then there isn’t much more I can do. At home, even if I had friends and family round, I can get up and walk around not giving two hoots what people think because it’s my safe space. And I can easily pop upstairs or walk about without thinking people are wondering what I’m doing.

I have some really supportive family and when my pain is bad I lie down on the sofa while one or two of them (depending how many of us are together at the time) have to sit on a dining chair. And my partner will always let me lie down on the sofa to get comfy.

I don’t take many tablets for my pains, but my neck pain can sometimes ease a little if I take both ibuprofen and paracetamol, and these can also get rid of headaches that are caused by my neck pain. I take these as discretely as possible to avoid drawing attention to myself so that I don’t get asked what’s wrong, or why am I taking tablets. Or simply to avoid someone asking if I am ok – as often I am not but I don’t want to say.

My anxiety makes things so much worse

I’m naturally a worrier, but my chronic pain has made my anxiety so much worse. Everything I’ve written above worries me when I have to go out. I always worry about how my pain impacts on others. This sounds silly, right? But how do others feel when I stand up when they’re all sitting down, are they embarrassed like me? How do my family feel when they are sat uncomfortably on a dining chair trying to relax in front of the TV? Do they resent the fact that I have my pain? What if my pain is so bad that I can’t hide it and I have no easy way to get back to my safe space?

I tend to always fear the worst as well. I think through different scenarios in my head and this makes me feel prepared. When the time comes and things don’t go as I’d feared, then that generally means it’s gone well. Again, silly right? I’m a planner and I like to feel prepared and organised to be able to face things, and more importantly, feel in control (read more about this in my blog post how my chronic pain has changed me).

I can often talk myself out of doing something that I’m worried about, and this instantly relaxes me. But opposite to this is the fact that I worry that I will miss out on things: I want to be the one who travels the world with my partner; I want to enjoy the fun night out with my friends; I want to go out for dinner at the fancy restaurant with hard seating and eat the amazing food they serve. All this anxiety on top of trying to manage my pain is tough.

I have to choose practical and comfy over fashionable clothing

I spend 90% of my time in either joggers or pyjamas. I have to wear clothes that are comfortable and that do not cause additional pain – I can’t wear anything too tight or that doesn’t have much give in it. Finding clothes for events such as a wedding is not easy; trousers must be baggy but also need to be comfortable and smart at the same time. What might be an easy task for someone without pain, can cause a lot of overthinking, stress and worry for someone like me who does have chronic pain.

6 thoughts on “Socialising with chronic pain: the struggles I have that people don’t know about”

Of course the comfy clothes, but I have invested in high quality, super soft snuggly blankets and pillows and use them all to cocoon myself! Since I also struggle with chronic overheating & sweating I also have a couple of fans blowing on me . This is my life when I’m in my nest at home, which is most of the time. In public I do what I can to replicate that which brings me comfort. So, I bring along a pillow (I have to sit most of the time) and a hand-held folding fan. I make sure I have medication (pain & anxiety) if I need them. And I get a cold drink to rest my wrists on to keep cool. Finally, I keep the outing as short as possible! Although I love our friends & family It is almost impossible to enjoy myself at an outing. It’s easier if the group is really small – people I feel close to and comfortable with – who I know I can trust not to judge me and totally get what I’m going through. What I really wish is if friends (1 or 2) would think a great night would be coming over to my house, and we could all lay on my bed with a couple bottles of wine and watching movies!

It certainly sounds like you have a tough time, and I’m so sorry to read this. I love the sound of your snuggly blankets and pillows. Things like these can help us feel that little bit better, can’t they. Have you tried inviting some of your close friends and family round? I’m sure the idea of chilling with a drink or two would persuade them to join you.

I’m so sorry that you have to go through this every day… there are so many things in your post that I hadn’t even considered – especially the standing up to eat and the comfy clothing. I have a few friends who have chronic pain as part of their illnesses, so I’ll be more mindful in the future when I meet them for a drink. Do you have any advice on how I can be supportive without actually making a point of it?

Thank you for your kind words Suzie. Your comment really made me smile and knowing I’d helped just one person understand a little more about chronic pain makes me realise what I’m writing is useful – so thank you.
Good question! I think I’ll do a blog post about this sometime soon. I’d maybe just discreetly ask if they’re ok if you think they’re struggling. That way you’re acknowledging their situation and they will also feel supported – which can be a real mental boost. I’ll come up with some more useful info though when I write my blog. Thanks again!

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I’m Alice, I’m here to help you cope with and understand chronic pain. I share my experiences, tips and advice to help you carry on doing the things you enjoy and teach your friends and family to understand more so they can support you.